Hi, just looking for some advice from anyone who has had bowel problems after treatment. So I am 6 months post treatment. I had the whole works, 11 weeks of chemo the 25 external radiotherapy and 2 brachytherapy. Immediately after treatment I was having ongoing diarrhoea but then it calmed down and I was just left with frequency and urgency. Over the past week or so this has changed to also include a constant pain/pressure feeling. Spoke to my GP on Thursday and he said it's radiation proctitis and prescribed fybogel (to bulk things) and buscopan. Last night and this morning I've also had some blood. Not due to see/speak to oncology for another 6weeks. I know in my sensible head that it likely is just radiation damage but there's also a little fear "what if it's bowel cancer". I don't really want to be that person but.....
Not really sure what I'm expecting from posting this but I know there are probably lots of you who've had same or similar.
Thanks x
Hi WendyJE! I'm so sorry you're going thru this. I can assure you it's perfectly normal to have those symptoms and perfectly normal to be worried it's a sign of cancer! I have had those same symptoms for 1.5 years since my treatment. For me the pain comes and goes. Sometimes there is a lot of blood when I go to the bathroom, sometimes none. I had a colonoscopy and was diagnosed with radiation Proctitis and colitis. The bleeding comes from blood vessels that were built to repair radiation damaged tissue but they're fragile and break and bleed a lot. I also have diarrhea, sometimes very urgent. I've found the dissolving Immodium can nip it in the bud pretty quick. 6 months is pretty soon, I was told it's normal to have all that for 9 months, but if it doesn't stop some treatment options I was given:
- Colonoscopy with cauterization of the blood vessels. Pretty easy procedure. Didn't do the trick for me but oftentimes it takes more than once to get them all.
- Hyperbaric therapy. 2 hours a day, every day, so nothing to sneeze at, but works for some. I think this helped but didn't complete fix me.
- Pentoxiflyine with vitamin E. Only a small sample on this one. I'm giving it a try now.
- Watch your iron levels. I ended up with severe anemia from blood loss, and I didn't think I was bleeding all that much!
- As for diarrhea, I wear every day the period underwear (ThinX brand) in case I have an accident. It doesn't happen often but makes me feel a lot safer in case I do have one. They hold anything in MUCH better than regular underwear.
Any other questions you have for me let me know!
I think we all become THAT person after treatment. Pee diagnosis we passed off twinges and discomfort as nothing to worry about unless it was very persistent. Now we are more aware and notice every little twinge.
I think a lot of us have the same /similar symptoms as you are describing. I am just over 4 years post treatment and still get different symptoms. I don't get check ups anymore but when I did I was just told it was normal and if troublesome then go back.
If you are concerned though, always contact your team x
Yep I agree - we are all that person. Every little thing is now .... what if it’s....
Check it out. I got an ulcer and it didn’t go away within two weeks. I refused to call the Dr as I was convinced I had mouth cancer and couldn’t face it all again. Eventually I rang - they had to ask me which area I was concerned about as they couldn’t see anything! It was nothing. The fear in the back of your mind is real though.Put it to rest by calling your team xxx
Thanks ladies, totally appreciate all your input as ever. I'm due to see (or maybe it will be a virtual clinic) my oncology doc next month so I'll just plod on and keep a note of symptoms to tell him about.
Wendy x
Hiya Wendy;
I have the same problem :(. Damn Pelvic radiation disease. I finished treatment 10 years ago and my bowel problems have just gotten steadily worse; most notably in the last 3 years.
I was meant to go to a "late effects of Radiotherapy" programme at my local Hospital this Spring, but of course now due to the poxy Covid 19 pandemic, that's been scuppered. :(
I used to be able to control it with a careful diet but now it doesn't matter what I eat, I'll get attacks of diarrhoea, cramping and urgency for no reason at all; sometimes just from eating anything :( .
It's extremely frustrating! It starts to affect all aspects of your life worrying about your damn bowels all the time. I'm a competitive Horse rider, work outdoors, and enjoy hiking and all sorts of outdoor pursuits (though not much during lockdown! lol ), but this really gets in the way :(.
I have discussed these issues with a few other people who have similar problems (in other online 'cancer groups'), but have never really found anyone who's been able to fully address this problem! Is there no way we can fix this?? :/
Has anyone really been able to avoid the daily diarrhoea, urgency, crampy pain and wind from this condition and move on with her life?? :o
